Death & Dementia: Life & Understanding My Dad’s Opinions

Death.

It is not nice or pretty. It is not a pleasant subject to think about or to discuss.

Whether we like it or not, death is inevitable. We can not avoid it. We can not run or hide from it.

We have to endure it at some point of our lives with family, friends, people we have known over the years, and pets. At some point, again like it or not, you know it will be your own time.

I have had to deal with the death of many around me. I have had to endure the loss of several friends, old classmates, neighbors, several pets, all of my grandparents and now, both of my parents.

I have no warm, fuzzy feelings for death.

Death causes so many painful feelings and emotions. While it is the end of life for the one who is claimed by it, death changes the lives of all those who are left behind. We are left to pick up the pieces, make sense of what we have left, and figure out how to move forward.

When dementia precedes death, it can become a real mixed bag of feelings. You watch a loved one, slowly, lose the life they have known, and start to lose their self to that mass of dark confusion called dementia.

Up until a certain point, it’s just frustrating, at times hurtful, because you know they are mixing up and forgetting things. Frustrating for loved ones, but for many with dementia, the individual is still happy and feels like they are living life; often not even realizing how mixed up they have things.

Eventually, the darkness spreads and you watch them lose more. They can no longer do things they had always done for their self.

Worse if they also start to develop delusions or start to realize something is wrong and they feel lost, scared, and angry, yet are at a point they can no longer retain your explanation of what is going on. The darkness of dementia leaves such gaps that they can confuse those who are by their side as the enemy and cry and wonder what happened to certain loved ones… when that loved one is the one that is standing by their side.

It is so hard to watch someone you love go through this. Often things deteriorate to a point that they feel and seem completely lost in the darkness. When you look in their eyes, all you see is hurt, fear, pain, anger, desperation, confusion, and emptiness. You know if they saw their self, it would be a crushing blow to their dignity.

If it is someone like my dad, you know he would not consider this life and would not want this. It can reach a point that you have to ask yourself if it’s fair to keep hoping for another day. My dad did not go through life sitting and waiting for death. He did not go through life beckoning death to come to him. He wanted to live; to be happy.

As much as he wanted to keep death away, he did discuss it with me many times. He had clear cut ideas and opinions when it came to death and to life.

He felt if you had life, you should live it. If he could no longer live it and could only be strapped up to sit in a chair or lay in a bed with his body just as a shell and his mind was no longer there, it was not worth it. He meant if he no longer had control over basic functions, machines had to do everything for him, and his mind was gone, especially if it would just keep getting worse, that was no longer life. He did not want things prolonged just so others could look at his body laying there.

He also had strong beliefs when it came to other people and his own death. He felt if others wanted to be around, they should be there while he was living life. He did not want people to wait until his body was a shell or until death had come to claim him. He felt if you weren’t there when he was alive and aware, he did not want you to come crying at the end. This is why he was so firm about his last wishes.

My dad insisted that when the time came, he did not want a viewing or a funeral. He insisted on just a quick graveside service. The thought of people suddenly, as he put it, showing up to cry crocodile tears over his dead body made him mad. Many times, he had said, “Ship my body straight to the graveyard. You can say a prayer if you want. But then, just put me in the ground.” Yes, I know my dad was a person who was straight to the point.

Years back when he first told me his wishes, I had a difficult time with the idea of it. But after watching him suffer and what he went through, especially over his last 2 years after the stroke and the acceleration of dementia, I came to understand. I finally got it. I know what he went through over the years. I know what he thought and felt. I know what those last 2 years were like for him. I know what he wanted during that time, what he cried for, and how hurt he was. Over time, I hurt for him and was shocked to see how few were really there. I know how that hurt him.

He was correct that most people wouldn’t be there while he needed them and would wait. I saw it. I found myself getting so angry that people who had not been around or called (when he could talk on the phone) suddenly wanted to go to his deathbed. I saw people get confused or upset that there wouldn’t be a typical viewing and funeral because they wanted or needed to “say goodbye or pay their respects”. Respects? Yes, that made me angry. Where were these people for years; especially when he was suffering and wanted, really needed people? They weren’t there. They didn’t visit or call him. Yes, I really got my dad’s point.

Not all of the final arrangements were handled exactly as he insisted he wanted. Someone else had the final say. There was a viewing, even though others insisted that wasn’t what it was, that was suppose to be for his wife, children, & grandchildren and well, a couple of other people. This was extremely awkward and painful for me. This basically ended up being a very few people staying in that room and me staying in another room with some others. No, I did not go into the room they had setup. I had no desire to go against his last wishes, nor did I desire or need to see the shell of his body or say goodbye. I had my memories of my last conversation with him just a few hours before he passed. That is what he and I would have; those final moments. That is what he would have wanted. The graveyard was a bit more than just a quick prayer. Again, nothing I could do but just sit there.

I looked at that day with eyes, heart, and a mind that understood what my dad felt. There were many people who had intended to come to the funeral. There was no funeral, but they were made aware there would be a short graveside service. They didn’t show since there wasn’t a big showing and funeral. Yes, there were some that said they didn’t see a reason to go if there wasn’t a showing or regular funeral. There were a couple of people who showed up that I know had not seen him for a long time, but there was reasons that seemed logical; life had just, understandably, led them down paths that went in different directions away from here. They chose to come to say goodbye since they had heard about his passing. Completely understandable. There was a couple of people who I have no idea why they showed up around things that day, being as they didn’t really like him. Yes, he was correct, there were some who never bothered being around him or for him, yet showed up to cry a bunch of those crocodile tears that he had spoke of for so long. That really bothered me. Of course, there were some who cried, myself included, that just hurt at the finality of the loss. I know my dad. Those tears, he would have understood.

Death is ugly. Death can bring out a lot of feelings and emotions. Death can change those who are left to live when a loved one passes. I have to admit the death of my dad did, among other things, make me lose patience with selfish people and behaviors. It showed me a side of some people that I guess I had avoided seeing before.

This all has also made me understand my dad’s beliefs a little better. I get the idea of, if you don’t care enough to cry with me and wipe my tears while I’m alive, don’t bother crying when I’m gone. Those are selfish, attention getting tears. Those are not tears for or about me, so don’t shed them over my body or in connection to memories of me. I use to believe thinking like this was harsh. But in reality, it makes sense.

Yes, death is not pleasant, but inevitable.
All we can do is make the most of life before death comes.
If you love someone, you will show it in your actions while they are alive.

You may not be able to control how death will approach you or a loved one, but YOU choose how you live life. All I can say, is in every moment in life, choose wisely. You may not have another chance to do something different.. that moment may be the last.

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